Choose the behavior power struggle. Make a Scene. Win. It is a win for clients.
People with disabilities don’t end up in facilities because they are incapable of learning, they end up there because someone didn’t choose the power struggle to teach them how to be successful.
As the leader of Sample Supports, a large agency offering comprehensive services to adults with intellectual and developmental disabilities, nothing shaped my leadership style and the mission of the agency like my time in direct care. I remember many instances where taking the easy route would have been just that, easy. “Easy” didn’t benefit the individuals receiving services though and most definitely didn’t teach them how to be successful. I stand by one of the strongest and most effective values of our agency, “no client is too hard for the community.” These are words that I stood by when I was working on the front line and has been a part of Sample Supports as an agency since it began.
One of my first experiences in the disability field was working with a young woman with down syndrome that lived in a group home. She was nonverbal (with some limited signs) and extremely aggressive. She would get upset and engage in property destruction and aggression towards herself and others. These behaviors would often start after she was asked to do something — help put away her things, wash her hair, pick up her clothes, etc. Her bites hurt (I still have a faint scar on my left forearm) and her chronic hair pulls were even worse (I am pretty sure some of it never grew back). My coworkers were scared of her and would clean up her messes behind her in an ineffective attempt to avoid the next level of aggression. They would talk around her and sigh in exasperation while she destroyed the home, trying to move out of her way when she lunged at them. Everyone then made excuses for her behavior like “Maybe she isn’t feeling well…”, “She is probably tired…”, “She can’t control herself because…” Ultimately, whatever she was asked to do never got done because she created such a distraction that everyone either forgot or decided it wasn’t worth the battle. Ultimately, people avoided taking her in the community because they were worried she would escalate and “create a scene”. It is because of my experience with this person that I tell our new employees a golden rule at our agency — Choose behavior power struggles with intention and commit to winning them.
I was working one of my first overnight shifts and she was getting anxious after dinner when I asked her to clean her plate. She was making angry sounds and started banging her head. I went about my business, cleaning up the kitchen and collecting the trash to take it to the dumpster, prompting her to please clean her dish as she continued to escalate. I left her plate on the table and continued to gather the trash and recycling. I was standing about 5 feet away from her when she eyed the recycling bin, full of hundreds of scraps of paper. She grabbed it and looked at me, then proceeded to tip it over. I watched the paper fly around the room as she stood and stared at me, holding the empty bin.
Maybe she was nervous, maybe she wasn’t feeling well, maybe she was tired, maybe she was testing me, but I decided it didn’t really matter. I told her she needed to pick up the paper and put it back in the bin. She banged her head, knocked over the coffee table and attempted to aggress. I blocked each hit and told her she needed to clean up the mess. She signed to me that she was going to bed and I stood in front of the stairs leading to her room and calmly said “No, you are going to clean up the mess.”. I had chosen a power struggle. She cried and threw herself on the floor. When that didn’t work, she banged her head into the carpet and then when that didn’t get my attention she moved to banging on the wall. I would ensure her safety, but do so from a distance and without giving any direct attention. I would then quietly redirect her back to the middle of the room (while she attempted to bite) to which she would start the cycle over again. Each time she showed signs of being calm I would prompt her to clean up the paper, which would prompt another round of escalation. This happened again and again and again. She took off her clothes and clawed at her stomach. She urinated on the floor and tried to break the TV. She slammed the front door and bit her own hand, screaming and trying to throw anything she could. I moved with her, staying close to her so she knew I was not fearful of her, quietly and intentionally “in” her space to keep the pressure focused. She would go up and down and in the “down” I continued to asked the same question that I had asked at least 30 times before: “Are you ready to clean up the mess?” I waited for minutes that turned into hours. Yes, hours. At some point (far after both she and I’s bedtime) she nodded yes and picked up a single piece of paper and took it to the recycle bin. She put her clothes back on slowly, letting out small noises that indicated she was not happy about the situation. The bin was laying on it’s side at this point and she looked at me expectantly. (As if after all of that work I was going to make this easy!) I said “you can stand the bin rightside up”. She did. I walked alongside her throughout the entire room, prompting her to pick up every piece of paper, cup, coaster, picture and pillow that she had thrown and turn over every side table that was overturned. The entire process took about 30 minutes. There were hundreds of tiny hole punch paper pieces on the floor and I crawled next to her while she painstakingly found each one. I crawled with her but I did not do it for her — she picked up every single one. Over the 30 minutes she would periodically stop and stare at me, her eyes narrowing. I would calmly and casually stare back, wait a few seconds and ask her to begin again. I had earned some sense of credibility in that power struggle—though she couldn’t say it, we both knew there was only one way out of that room for both of us, and that was to clean up the mess. She ultimately cleaned up every piece of paper. Oh, and she cleaned her plate too that was still waiting for her at the table. She was capable of following through and doing the task at hand and I engaged in the struggle to reinforce this to her….and to myself.
I wish this story ended with “I taught her a lesson and she never did that again”. Of course it doesn’t. In the next several years I spent working with her we had many more power struggles — hundreds...not an exaggeration. I treated each one with the same intensity and coached my peers to do the same. Working as a team, the behaviors themselves decreased in time and intensity. We all built confidence in taking her in the community and became more comfortable with the potential of “making a scene”. Not to sugarcoat it — many public scenes were had, and we worked through them. Working with people with disabilities is a marathon, not a sprint. There are no quick miracles, but there are small successes that build and build until they become incident-free hours, days, weeks, months and maybe years. The people we serve don’t want to have incidents — they are embarrassing and self-esteem killers for them. No one wants to feel bad about themselves or their actions. We as the people that help them need to embrace the challenge of helping them decrease their incidents, even though this may mean a temporary spike in them occurring once we address them head on.
Success never happens from avoiding a challenge. We have to embrace the struggle — choose the fight….and win. It isn’t “winning” to feed our egos of power and superiority. It is a “win” for teaching full circle boundaries, accountability, and appropriate social behaviors. It is ultimately a win in teaching someone that they can be a part of a functional household that each does ‘their part’, which in this case simply included cleaning your own plate. When I chose that power struggle I internally committed to the incident lasting as long as it needed to take. I was committed to a resolution, whether that was 20 minutes or 8 hours. I was willing to engage in the struggle and lean into it as long as it was needed. It was ultimately her win as she made a step closer to learning the skills to be able to truly function successfully at home and in the community.
People that are taught they can escalate and aggress to get what they want will inevitably “up the ante” until they are at some point deemed “uncontrollable”. It is then that discussions of community appropriateness occur and this cycle is how people end up in institutions. People don’t end up in facilities because they are incapable of learning, they end up there because someone didn’t choose the power struggle to teach them how to be successful.
Choose the power struggle…make a scene…and win. It is ultimately a win for the person depending on our services and care.
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